Travelling with HI
This helpful family guide to travelling with Hyperinsulinism, will hopefully help you to feel reassured when taking trips or holidays at home or abroad.
Make sure you take at least double the amount of medication and equipment you normally use as a precaution in case of accidental spillage, disruptions or you need to stay longer than planned.
Planning can help you to feel more confident in your travel plans.
Ensure you have a GP or Consultant letter with you and that you have travel insurance in place.
Speak with your Hyperinsulinism Specialist Team to ensure you have enough supply of medication, equipment, contingency/spare equipment, CGM equipment and any other medications you may require. Ensure you have factored in any hypoglycaemia treatments such as glucogel or SOS.
Take a travel letter with you from your Hyperinsulinism Specialist Team or another medical team. This should state you have Hyperinsulinism and any other medical conditions and that you need to carry medical supplies. This letter is often required by airlines, travel operators and could be essential in an emergency.
Take a copy of a recent prescription with you.
Check that this travel letter explains any relevant details regarding your medicines for example if it is in liquid form, needs special storage, or containers over 100mls and includes any devices or equipment that you use.
Hospital Passport
Cambridge Rare Disease Network (CamRARE) have partnered with The Children’s Hyperinsulinism Charity to create a hospital passport which folds down into a lanyard sized document, you may find this a useful resource to travel with. To get one please click on the link below, when completing the form, select our Charity and it will be emailed to you as a downloadable pdf
https://forms.gle/ggp9afsaH8p8Ezd46
Download a medical awareness card
A good tip is to download a Medical Device Awareness Card from the Civil Aviation Authority website. This is particularly helpful if you are using a CGM or Freestyle Libre. It is not a requirement but just helps (along with your medical letter) to explain to security and has rules on screening if you are wearing a medical device.
You can find it here:
Delays and Time Zones impact on Medications and Devices
Make sure you plan for any differences in time zones which may mean a longer day, or gap between medications.
You may need to take extra snacks and hypoglycaemia treatment such as glucogel or SOS.
Check your CGM has updated to the different time zone, the apps usually do this automatically but worth checking. Freestyle Libre devices may need to be manually changed.
Storing Medications
Plan for any special storage requirements your medication may have. For example, it may be worth checking if the hotel has a fridge in the room to keep medications cool. Also factor in how you will keep the medication cool whilst travelling, such as cool bags and ice packs.
Travel Insurance
Travel insurance is essential if you want reassurance that emergency medical costs are covered. Ensure that the travel insurance covers pre-existing conditions and you have explained that you have Hyperinsulinism and any other medical conditions you may have. Check what is covered carefully in your travel insurance. Be careful with travel insurance and/or free health cover that may be offered as this may not cover costs if you need to return home and it may not be sufficient for your needs.
Some useful websites:
The Government Foreign Travel Advice Page will tell you latest advice, entry requirements and travel warnings for your destination and can be found here:
https://www.gov.uk/foreign-travel-advice
Healthcare for UK nationals visiting the EU – this link tells you how to get state healthcare when you’re on holiday or travelling to a country in the EU, Iceland, Liechtenstein, Norway or Switzerland. It will also tell you about European Health Insurance Card (EHIC) and Global Health Insurance Cards (GHIC)
This link allows you to find out more and apply for European Health Insurance Card (EHIC) and Global Health Insurance Cards (GHIC)
What to pack in your hand luggage
- All Hyperinsulinism medication and any other medications.
- Equipment including pumps, sensors, and device spares. These are usually carried in hand luggage as in some cases they can be damaged by x-ray scanners.
- Medic Alert Card
- Sunflower Lanyard
- A letter from your Hyperinsulinism Specialist Team, another medical team or GP explaining you have Hyperinsulinism and any other conditions. This should detail any medication requirements. Any equipment such as feeding pumps and spares. As well as to explain if you are using a CGM or flash glucose monitor.
- A recent prescription.
- Hypo treatments
- Extra snacks and drinks in case of delays
A good tip may be to split meds between separate bags, in case one gets lost or delayed. There should be no restriction on how much medication you need – liquid over 100mls will need to be stored in the hold. There is no restriction on the number of tablets that you go through airport security with but these should be detailed in your medical letter.
Make airport security aware if you are wearing a CGM or Libre device as they should not be exposed to x-ray scanners. Ask for an alternative way to be screened e.g. ‘pat down’ if you do not wish to remove the device, you should not be forced to remove the device.
Sunflower Lanyard
Wearing the Sunflower Scheme Lanyard can help to alert airport staff that you or your child may require extra help or assistance, for example to avoid queues and the impact that can have on hypoglycaemia. Or if your child has other medical or additional needs and may find the environment challenging.
Medic Alert Cards
MedicAlert members benefit from access to our vast collection of medical ID jewellery which not only draws attention to the presence of an underlying condition or illness but also provides access to a 24/7 emergency helpline.
This helpline, which connects first responders and medical professionals to a comprehensive breakdown of the information relating to the MedicAlert member, is available in over 100 different languages. So, wherever in the world you find yourself, your medical information can be accessed and interpreted efficiently and effectively.
Routines:
Where possible try to keep to your normal routine on holiday. Be aware of how blood glucose measurements may be described or recorded at your travel destination for examples mg/dl. In case you need to access medical or hospital care or advice.
Remember that blood glucose can be affected by temperature, exercise, stress, swimming, illness and eating a different diet to what you are used to. Ensure you keep vigilant whilst away and monitor blood glucose levels carefully.
Family Tips
CHI Mum Claire
“I have travelled to both USA and canaries with all his equipment, got letter saying what equipment I was taking from either GP or endocrine team. The first time I had powdered milk, some in hand luggage and rest split into all the cases, medication for the full holiday was kept with me in hand luggage, even got an ice bucket from cabin crew to keep it cool on journey.
The second time I had pre-made feeds, we were given an extra hand luggage for his milk and medication as I was worried it might burst in luggage so I used a hard small case and that did the trick.
We managed fine on both holidays, I also took a copy of his repeat prescription so if we needed anything it was easier to get. I will say it frightened me at first leaving the U.K. but actually we had an amazing time and we have booked again for next year. We talk to special assistance in good time before we fly and they make sure everything is in place for us”
CHI Mum Leanne
“We take everything in hand luggage and we have two identical bags. In the first one it’s everything they need for the week and then the second is an identical emergency bag for both girls.
It seems extreme but relieves my anxiety and always worked well. We have everything for every eventuality then.”
CHI Mum Alex
“Check in anything that can go in the hold, so tubes, bottles if you decant feeds etc but hand luggage for the liquids and meds and pumps. Our HI Specialist Nurse Kate did a brilliant letter about dexcom and feed, meds etc but I also took a prescription list from gp.”
CHI Mum Megan
“They ask for everything to be labelled and I print out a summary of his health conditions/prescriptions for the gosh app. They always pull us to the side and look/test things but it’s only ever taken 20 mins tops! Also, if you can have travel documents printed in the language of the place you are visiting but generally places like Spain etc the majority speak English.”